Overwhelmed into Isolation

By Melissa Hendricks

We tend to think of the senses as being either on or
off, like a TV set. But sometimes the TV set is turned on, and
all you get is snowy reception.

Four-year-old Kenny McGowan will not kiss his mother. He'll hug
her. He'll sit on her lap. But no kisses. He is adamant about
that. He's not being insubordinate. He simply does not like to
have his lips touch anything, not a cheek, not even ice cream.

Kenny is autistic. He does not speak, avoids eye contact, and
until he began working with therapists at the Johns Hopkins
Kennedy Krieger Institute and special education teachers, he
would scream and flee when family friends visited. The inability
to communicate emotionally and to interact socially are principal
features of the developmental disability called autism, says
James Harris, director of developmental neuropsychiatry at the
Johns Hopkins School of Medicine and of the Johns Hopkins Autism
Clinic. But Kenny also has another problem shared by many people
with autism. He responds abnormally to certain sensations.

"Abnormal" means that many autistic people, on the one hand,
cannot tolerate certain sensations and, on the other hand, are
preoccupied with others. The range of sensation and the types of
responses run the gamut. Kenny generally does not like light
touch: kisses or brushing his teeth. He also does not like to
touch new things with his hands, and prefers instead to explore
with his feet. A 5-year-old autistic girl named Corie, who also
receives therapy through Hopkins, covers her ears and runs
whenever she hears a particular high-pitched phrase on Sesame
Street.

On the other hand, Kenny loves deep pressure, such as a firm
massage. He also enjoys being tucked into a small space such as a
laundry basket. One of Harris's patients, says the psychiatrist,
"grooves on the feel of cheerleader pom-poms."

While everyone has smells, sounds, and textures they like and
dislike, for autistic people, these sensations are extreme, and
can result in unusual rituals and repetitive behavior. For
example, many autistic patients (including Corie) like to hold
their hands close to their face, and flap their fingers, or to
rock back and forth.

It is sort of like seeing the sensory "noise" in the environment,
when everyone else is aware only of the clear signal, says David
Lerner '82, who is autistic. Lerner has overcome enough of his
autistic behavior so that he now lives independently and works as
a hydrologist for the state of Delaware. In the hope that he can
help professionals and families understand the problems autistic
people encounter, he is writing his autobiography.

"Sometimes when I look at you, there are things coming at me from
the sides," he says during an interview at his home. He says
these things are not physical objects. It is more like sensory
data are rushing at him and racing past him, and he cannot absorb
all the information. He is overwhelmed.

"It's like I'm on my own frequency of wavelength, and not on
other people's," he says. "Think of a four megabyte computer
versus a 12 megabyte computer. Or a one-lane highway versus four
lanes. My brain is like one lane versus everybody else who has
four lanes."

The term autism was introduced in the early 1940s by the founder
of child psychiatry at Hopkins, Leo Kanner. For a while the term
"Kanner's syndrome" was even used to describe typical cases of
autism. Kanner was the first to recognize that the children who
withdrew from society and failed to communicate belonged to a
distinct group. Before then, for lack of a better understanding
of their symptoms, many children with autistic behaviors had been
categorized under that catch-all of mental illness labels:
schizophrenia.

Much more is understood about autism today, though in many ways
it still challenges diagnosticians. The symptoms of one autistic
person may be very different from those of another, says Harris,
who is a prot‚g‚ of Kanner's. About 70 percent of autistic people
are mentally retarded. But among the autistic there are also
thoseÄa minorityÄwho display savant characteristics, such as an
unusual ability to work with numbers. (Dustin Hoffman portrayed
such a character in the movie Rain Man.) It is not surprising,
therefore, that autism is often difficult to diagnose. Depending
on how stringent the criteria used to make a diagnosis, it
strikes between two and 15 out of 10,000 children. Its symptoms
generally appear in toddlerhood.

At Hopkins, numerous physicians, psychologists, and therapists
diagnose and treat autistic children and adults, and conduct
research on the disorder. They weave together many different
techniques and therapies, ranging from behavior modification
therapy, to drugs for symptoms such as hyperactivity, which can
accompany autism. They also work with patients on skills ranging
from socialization to physical coordination. The treatment is
tailored to the needs of each patient, says Harris.

Patients are seen at the Johns Hopkins Hospital's Children's
Center and at the Kennedy Krieger Institute, which last year
opened the Center for Autism and Related Disorders. Staffed by
physicians, psychologists, occupational therapists, and speech
and language pathologists, the Hopkins center provides medical
and therapeutic care, and works closely with schools and families
to help develop education programs for children with autism.

There is no cure for autism, and only the rare autistic person is
able to conquer the disorder enough to achieve goals such as a
job or marriage, says Carl Feinstein, the Autism Center's medical
director. Few are as fortunate as David Lerner. On the positive
side, however, educational methods geared to people with autism
have improved dramatically in the past decade, says Feinstein. So
autistic children born today may have a greater chance of living
independent lives.

Though authorities on autism have not accepted one method of
treatment, says Feinstein, "a very strong early intervention
should take place." It is becoming increasingly clear that the
earlier the disorder is diagnosed and therapy begun, the better
the outcome.

Once a week, Kenny McGowan and his mother, Cathy, meet with Lynn
Medley, a speech and language pathologist at Hopkins's Center for
Autism. The sessions take place in a bright play therapy room
filled with colorful toys at the institute's Fairmont Building.
Medley tries to teach Kenny the simplest aspects of
communication, such as how to pointÄthings other children learn
on their own.

Kenny is a slender boy with elfin features that in another child
might go with an impish grin. But he doesn't know the meaning of
mischief. At the beginning of a recent session with Medley, he
sits languidly in his stroller, refusing her attempts to coax him
out.

"I am getting. I am getting. Kenny's foot. Kenny's foot," Medley
sings, while she spider-walks her fingers through the air to the
little boy's foot. She pulls off his socks and shoes, and
massages his feet, legs, and arms. Anxiously, Kenny looks at his
mother, who is sitting on a couch a few feet away. He
participates briefly in the activities Medley initiates, then
tries to climb back into his stroller, making high-pitched
whimpering sounds. Medley repeatedly pulls him back out.

She presses upward on the sole of Kenny's foot and downward on
the top of his knee. "This is called joint compression," she
explains. "In the O.T. [occupational therapy] world, they say it
gives you information about where you are in space. You get
information about where your foot is in relationship to your leg,
for example."

She hopes the technique will improve Kenny's ability to
coordinate and plan a motion, a skill professionals call praxis.
"Praxis is like seeing in your head what you do," explains
Medley. "How to get an action started, put together a sequence,
what intensity to use, and how you remember how it felt and what
it looked like."

Praxis problems, she believes, contribute to Kenny's lack of
speech. "It is very hard to coordinate your tongue. Your tongue
moves so subtly, and you cannot see it." Unable to coordinate all
these subtle steps, Kenny has not even figured out how to make a
"d" sound. If he would allow her, Medley would use massage to
press on parts of his mouth, teeth, and face, as she does with
other autistic patients, to heighten his awareness of those
areas, which, with luck, would lead to his experimenting with
speech. Because of his aversion to touch, for now Medley mainly
massages his limbs. The hope is that massaging will also help
Kenny learn to tolerate light touch. With Kenny and her other
patients, Medley uses shaving cream, sheepskin, Play-doh, and
other substances to help them overcome aversions to different
textures.

By the end of the hour, he begins to hum quietly in a hypnotic
monotone. "He's zoning, trying to drop off in a sensory way. He
has trouble staying aroused," says Medley. So she picks him up
and gently spins him around. Working with children like Kenny,
Medley says, is like "walking a tightrope." They can so easily
shift from agitation to inattention.

When the session is through, Cathy McGowan drives her son over to
the Kennedy Krieger's Broadway Building for his next appointment.
On the drive over, she explains that Kenny was a normal baby who
could say "Mom" and "Dad" by the time he was 18 months old. "I
used to say, 'Kenny, do you want to take a bath?' and he'd run to
the bathtub." But after he was about 18 months, he started to run
away from people. Soon he wasn't talking. Kenny has made some
improvements since starting therapy at Kennedy Krieger about a
year ago. He no longer screams when strangers come over, she
says, and he will take her hand and show her things he wants,
which he was incapable of doing two years ago. But it's still a
mystery to her why her son is autistic.

Researchers have proposed several different models of autism, but
many authorities say no one model may explain all of the
disorder's clinical features. "I don't believe there is one core
deficit responsible for all the social, behavioral, and
communication abnormalities in autism," says Rebecca Landa,
associate professor of psychiatry and director of the Center for
Autism. "I think multiple systems are involved."

According to one theory, in autism the brain cannot
integrate different types of sensory information. The theory goes
that people who are autistic do not have a sharper or duller
sense of hearing, vision, or any other sense. Rather, their
ability to sort out important sensations from unimportant ones
may be impaired.

Suppose you are looking at an acquaintance, says Harris. Your
brain absorbs information through the visual system about the
neighbor's faceÄits expression, size, proximity to youÄand
integrates all of the information into a visual gestalt. If the
acquaintance speaks or gently reaches out to you, "the brain must
also link words with the visual gestalt of the face, and
interpret the acquaintance's reaching out toward you as a
friendly gesture." But autistic people, according to the theory,
have great difficulty integrating all of this information and so
might think the friendly gesture is an attack.

Many researchers say that autistic patients cannot "modulate"
sensory information. "If an autistic child comes into my office,
and the heater and blower are on, he may be oblivious to what we
say," because he is captivated by the humming and blowing. "I'm
normally inhibiting those things," says Harris, "and he can't."

Other theories hold that sensory problems are secondary, "markers
that give scientists a tremendous clue as to what is going on in
the brain," explains Feinstein. According to one view, "autistic
people lack the ability to recognize that other people have a
mind, that they're individuals. So all information coming in
becomes meaningless," explains Feinstein. He is quick to point
out that so far the evidence has not supported one theory more
than another.

The one thing investigators can say resolutely about the cause of
autism is that it stems from a brain dysfunction, says Feinstein.
A number of studies indicate that autism involves defects in
several areas of the brain, including regions involved in sensory
processing.

In autopsy studies, Margaret Bauman of Harvard Medical School and
her colleagues found that the brains of autistic patients weighed
100 to 200 grams above average. In the hippocampus and amygdala
(parts of the limbic system), many cells were abnormally small
and packed together, and had fewer connections to neighboring
neurons. These parts of the brain are important in processing
information about the environment, including the ability to
recognize emotion in a facial expression, says Landa.

Further, Bauman found the cerebellum contained 60 to 90 percent
fewer Purkinje cells, a major cell in the cerebellum. In addition
to coordinating movement, the cerebellum is theorized to play a
role in the fluidity of speech and thought.

Most of Bauman's subjects had been mentally retarded, and her
sample size was small, notes Landa. Nevertheless, the results
support a theory gaining more attention from researchers, which
says that the brains of autistic people may have been stunted
during prenatal development and the first two years of life. In
this process, neurons migrate, mature, and make appropriate
synaptic connections. The neurons that do not become part of the
meshwork die off. In autistic children, according to the theory,
these extra neurons may be preserved.

Several studies suggest that a genetic defect may underlie
autism. Through standardized tests and interviews with relatives
of autistic patients, Landa identified a spectrum of autistic
symptomsÄsuch as having trouble planning a sentence or carrying
on a normal conversationÄin "an order of magnitude that was
striking," she says.

Cathy McGowan does not spend a lot of time thinking about what
goes on in Kenny's brain. "Our number one priority is
communication and social skills," she says.

When McGowan wheels Kenny into the occupational therapy suite at
the Kennedy Krieger Institute, Kenny does not hesitate as he did
in the play therapy room. He climbs right out of his stroller and
into a highchair in one of the curtained-off sections of the
large room. "He gets to eat a lot here," explains his mom.

Occupational therapist Mary Lashno arrives, carrying a yellow
plastic bowl of vanilla ice cream, which she places on the tray
of the highchair. The ice cream is a treat and a lesson. Kenny
scoops up a spoonful and places it in his mouth, carefully
curling his upper lip back as far as it will go to avoid touching
the ice cream or spoon. With each bite Kenny takes, Lashno gently
pushes his lips together so that they touch the spoon and ice
cream. Kenny tolerates this because he loves ice cream.

Lashno next removes his shoes and socks, helps him down from the
highchair onto a big red mat on the floor in front of a large
wall mirror, and sticks a lump of green Playdoh on the mirror.
Kenny squashes it with his feet. No matter what material they
work withÄbuckets of rice or corn, PlaydohÄKenny insists on
touching it with his feet first, Lashno explains. "Feet are his
little gauges."

Lashno tries to get Kenny to climb onto a large swing, but Kenny
definitely does not want to do that, so she allows him to crawl
back into his strollerÄwhat she calls his "womb space." She
averts her eyes whenever Kenny gets uncomfortable.

"I'm still trying to show him I'm his friend," she says. When an
autistic child senses a distressing light, sound, or smell, all
the child's attention is focused on that stimulus, says Lashno.
The child is prepared to flee and cannot pay attention to
anything else. That gets in the way of learning. "I always
correlate it to being in a room with a snake and being told to
learn something," Lashno says sympathetically. "You think I'm
going to learn something when a snake is in the room?"

"The senses are our first elementary contact with the
environment," says Harris. "All we learn about the world we learn
through our senses." As young children mature, they learn to
evaluate sensory information and draw conclusions, a process that
taps into the emotions: "That man is smiling at me. He must like
me. That makes me happy." In responding, children also learn to
demonstrate their own emotions. They smile back.

Since they have difficulty processing sensory information,
autistic children often don't recognize that someone is smiling
at them. Instead of returning the smile, the child might maintain
a poker-face. This flat affect is common in autism, and
particularly painful for parents.

"What could be more distressing than to have a child who does not
respond in a normal emotional way or who cries when a parent
smiles?" says Harris.

So part of the job of working with higher-functioning autistic
patients is helping them learn the vagaries of social
communication, such as affect, says Harris, who specializes in
counseling autistic adolescents. An autistic patient may master
language, but still not understand the non-verbal cues of social
interactionÄlike drumming one's fingers on a desk to express
impatience, or yawning to show boredom. "Almost uniformly, even
when they can gauge their own feelings, they still can't gauge
others'," says Harris.

It was for that reason that David Lerner spent the better part of
one summer watching soap operas.

Frances and Monroe Lerner live in an old rambling house in a
western suburb of Baltimore. It is loaded with books accumulated
over a lifetime. Monroe Lerner, a professor emeritus of health
policy and management, taught and did research at the School of
Public Health for 26 years. Frances Lerner taught political
science and sociology at the University of Baltimore.

As the crickets and bullfrogs try to outsing each other one muggy
night this past spring, David Lerner and his mother relax over
cool drinks in the Lerners' living room and chat about David's
growing up. An animated man with dark hair and a stocky build,
the 38-year-old willingly answers questions about himself, but
lets his mother do much of the talking.

"When David was about 3, he wasn't talking," recalls Frances
Lerner. "He was cheerful and bright, but he was in his own
world." Throughout his childhood, he reacted strangely to certain
sounds. A barking dog or a hissing gas stove would make him cover
his ears and scream, or run away. Like Kenny McGowan, "he
wouldn't come for kisses," says Frances Lerner. He'd allow his
cheek to be kissed, but he would never kiss anyone.

"I'd kiss like this," adds David Lerner, and he kisses his palm
and places it on his mother's cheek.

In the early '60s, when David was a toddler, little was known
about autism, says Frances Lerner. When David was 3, a
neurologist diagnosed him as mentally retarded and recommended
that he be institutionalized. A few months later, doctors
concluded that he was severely emotionally disturbed.

Those diagnoses never seemed to explain David's behavior, says
Frances Lerner. After the family moved to Chicago a year later,
she and her husband hunted through the psychological literature
for two years to find a description of behavior that would best
match their son's. They finally realized that David was
autistic.

However, knowing what to call David opened a new packet of
problems. "Autism used to be called the Mommy Disease," says
Frances Lerner. "The mommies did it." Psychologists like Bruno
Bettelheim said that "refrigerator mothers," who withheld
affection, drove their children to be socially withdrawn and
uncommunicative. Fortunately, Frances Lerner had an older child,
Robert, who was not autistic, which helped convince her that she
was not to blame for David's autism.

In his autobiography, David calls his first five years of life
his "extended infancy." Human relations were foreign to him, he
says. "I used other persons around me as tools. I just didn't see
them really." In the grocery store, he would ram the grocery cart
into shoppers.

Slowly David began to emerge from what is called the autistic
state. Around his fifth birthday, he began to talk. "It was like
walking through quicksand," he recalls.

The Lerners enrolled him in a school that specializes in
educating autistic children. "We gave him speech lessons and
acting lessons," says Frances Lerner. When David could not read
his assigned books quickly enough, his mother read them to him.
"We tried in every way to help him improve. And yes, he did," she
says. About the time he was 6, says David, "I began realizing
something was not right, and I wanted to make it right."

He learned to "tune out" the extreme sensory stimuli, the noise
in the system that rushes at him, he explains. While high-pitched
sounds continued to bother him (and still do, though not as
much), he learned to grit his teeth instead of running away from
them. "I can accommodate it," he explains. "I've learned to hold
myself together, not to get all bent out of shape about it."

With practice, he even learned to look people in the eye, and now
makes at least as much eye contact as an average preoccupied
Hopkins scientist.

After spending several years in a special education class at a
public school, young David entered a regular fifth grade class.
Sometimes with extra help, he progressed academically. But he had
few friends, and in high school, when other kids started dating,
he did not.

It was clear to Frances Lerner that her son did not understand
the emotional underpinnings of friendship. So she came up with
an idea. The summer before David enrolled at Hopkins, he and
Frances became students of the soap opera. Every afternoon, they
watched All My Children, and Frances Lerner would quiz her son:
"Why does Erica act the way she does? Why is that man crying? Why
are they in love? What is friendship? What is the context of
their friendship?"

"It isn't enough to sense the emotionÄyou have to explain what
you're sensing," she says.

At Hopkins, David Lerner majored in earth and planetary sciences
and received an award for "Unique and unprecedented achievement
in overcoming a childhood handicap and completing his
undergraduate studies." In 1986, he earned a master's degree in
geology from the University of Delaware.

Hints of autism remain for David. He is still what you might call
a "hyper" person. During a conversation, he taps his leg, drums
his fingers on a chair, stands up to pace the room.

Touch is still problematic, though less than it was. "I can hug
now. I can do that," he insists. And it is true that for a person
once diagnosed as severely autistic, he has made enormous
strides. He owns a townhouse in a suburb of Newark, Delaware,
where he lives with his two cats, George and Gracie. As a
hydrologist for the Delaware Department of Natural Resources, he
oversees the clean-up of leaking underground storage tanks. In
his free time, he enjoys playing computer games, watching TV, and
working on his autobiography. In many ways, he is like other
people.

Getting the right help was a big factor in helping him succeed,
says Lerner. "My parents somehow impressed on me that something
was wrong with me and I needed to overcome it," he says. "I came
from an academic family, one that was not embarrassed and did not
hide me. The fact that my parents took me to public places did
help."

When Leo Kanner defined autism, he said that people with the
disorder lack social understanding. They do not understand that
they have a self, and that they belong to a social species.

David Lerner kept to himself when he was a young child, but was
not aware he was alone. When he started to emerge from the
autistic phase, says Monroe Lerner, "He'd ask me a million times,
'Tell me what's wrong with me and I'll fix it.' The very fact
that he asked me a question indicates that he had an awareness."

David Lerner has continued to learn more about his disorder and
how it affects other people. But awareness comes with a price. He
increasingly realizes that he is different and that this
difference makes him socially isolated. "It gets more painful all
the time," he says. Ironically, loneliness for Lerner is a sign
of recovery.